Frozen pelvis

[Tjb45]

Went in for keyhole op on thurs to remove chocolate cysts caused by endometriosis

Came round from op to discover they were unable to see anything as all my organs are knitted together with the condition called frozen pelvis! They couldn't even see the ovaries tubes or uterus.

Post op I'm very tearful when no one can see me cry as I'm trying to cry alone to be brave in front of my loved ones. Lots of shoulder pain but they did say that can be from gas used during op. Tummy swollen & sore. All I can say is it's

Not a great combination I'm in more pain now, nothing was done during surgery & I've not got the post op recovery to add to my symptoms. Does anyone else suffer from frozen pelvis?

[Hidden]

I have this too, was your op in general gynae, not a BSGE endometriosis centre? X

[Tjb45 in reply to Hidden]

My op was in a gynaecological unit! I wonder if I ask my GP can I be referred to a specialist unit somewhere.

Sorry for the lack of information but what is a BSGE?

I'm less than 48hrs post op so this is all very raw & new to take in!!!

Thank you

[Daisychain222]

I am very sorry to hear that your surgeon left you with a frozen pelvis!! I am shocked that you were put under a general anesthetic and your doctor did nothing. I have had a frozen pelvis 2x and luckily my dear OB/GYN took the time to unfreeze the mess in my pelvis. The shoulder pain you are experiencing is very comman and I have had it after every surgery to help my endometriosis and servere adhesions including multiple chocolate cysts. Interesting, every ultersound I have had showed "nothing!" But once my doctor was able to see into my pelvis ..... well there was always a lot to deal with.

Having that terrible gas pumped into your tummy to help your surgeons see what is going on causes a lot of pain and discomfort. Studies have shown that this gas also contributes to more adhesions!!

I would encourage you to find a better specialist. Take good care of yourself and please don't try to be brave!! Surgery is very scary! Waking up to bad news and that your doctor did nothing to help your pain would bring anyone to tears. Holding your tears in will make things worse

Sending you many Blessings of Hope, Health, and Healing

[Tjb45 in reply to Daisychain222]

Thank you for your supportive message I really didn't realise I was in so much of a pickle! I only thought it was bilateral chocolate cysts! My consultant wants to do another scan in 4wks in clinic but I think by then I'll be stronger & our conversation may well be going along my lines a little more than hers! I'm going on the 6mth injection to try to shrink the frozen pelvis 1st then review the situation 😪😪

[Daisychain222 in reply to Tjb45]

Have many surgeries I convinced my OBGYN to allow me to take the Birth Control Pill every day of the year ..... for years! This way I did not have any periods and it help me immensely 💕Perhaps you could discuss this with your Surgeon. I did this until I was older and at a better age for my hysterectomy.

We need to Make Changes with the Medical Communities for More Education and How to Treat Endometreosis and Help Women.

God Bless you 💕

[Tjb45 in reply to Daisychain222]

Thank you for your reply wishing me all the best that's very kind 👍 When I found out I had cysts they said I have 3 choices

Do nothing

The zoladex injections or surgery not once did anyone recommend the pill but it might be my age (45)!

[Cat247]

Aww bless you. Yes I've had this but it is a bigger op you need to sort it out and you may need other surgeons present as it will be involving your bowel and bladder. I waited 6 months for my excision surgery after being diagnosed with frozen pelvis. It wasn't easy and probably the worst most painful 6 months of my life. But once the op was done it changed my life. The recovery wasn't easy but once I felt better it was great and I went on to get pregnant. You need to find out more like I did after I got told I had that. What I did was ring the surgeons secretary and I begged for a follow up in clinic asap as I was so upset and confused. She was lovely and arranged that. So chase your follow up so you can get more info. I'm pretty sure they'll be planning further surgery for you as can't leave you like that. You need to make sure any further op is carried out by an accredited surgeon at a BSGE centre.

My op was in 2014 and sadly I'm in a terrible way again with pain but just had another lap and no new endo but ovaries completely stuck with adhesions now. So got a new battle on my hands. 😭

Best of luck to you.xx

[Tjb45 in reply to Cat247]

Oh my goodness you sound like you've had a terrible time of it! I don't want children so Thank god im not worrying over my fertility to!

I'm going to try the 6mth injection to try to shrink the frozen mess! Any further surgery will need to be carefully considered as I'm not sure if I will stay with my current consultant. The thought of further surgery the way I feel now is making me feel worse. But I'm less than 48 hrs post op so I guess it's only natural!

Would a hysterectomy be the permanent answer then if nothing is there it can't come back? I'm not sure it's early days

Hope your feeling well soon

[Daisychain222 in reply to Cat247]

I also have experienced your journey !

I was able to convince my OBGYN to allow me to take the Birth Control Pill every day of the year and it helped immensely ☺️ I did this for years so I would not have periods.

There were no side effects and stopped my periods until I could have my hysterectomy at 39yrs. This was back in the 90's and no one had done it before. Doctors are more willing to try this form of treating horrible pain and problems from endometriosis. Estrogen is like a fertilizer for endo to grow and cause scarring, pain, bleeding etc.

Stopping your periods will stop your body from ovulating, periods and greatly help your pain.

Please consider discussing it with your doctor and share with other women that suffer with this terrible disease.

God Bless you🕊

[Marcia71]

bsge.org.uk/centre/

Will give you list of all endo centres and you can choose which you go to.

Sorry I've not read all responses but hysterectomy is not a cure for endo so please don't get talked into that until you are ready. I had a hyster and ovaries out and ended up in worse pain as not done at specialist centre and endo not removed. I've now had excision at bsge centre so slowly feeling better but op recovery is awful and takes time.

[carrie75]

Hello, I'm so sorry to hear you've been through such a rollercoaster, take good care of yourself X

I have frozen pelvis too, diagnosed end of 2015. I had zoladex and 2 unsuccessful fertility treatments, felt I wasn't getting any further with the gynaecologist I was under : managed to get appointment with a bupa gynaecologist a few weeks ago who is hoping to do excision surgery under bsge in Edinburgh. Had an mri scan too which showed it's all still bad and kidney was a bit swollen too.

I was so scared to think nothing could be done but it's really reassuring to hear of your experience cat247, especially as you went on to become pregnant. Would agree with you 100% too, learning all about endo and the need for it to be taken care of by specialists at a bsge centre is really important. My previous gynaecologist kept insisting I didn't need referred on, bear in mind he opened me up at my first operation and saw the mess I was in. X

[Saraht100]

Hi. I had a laparoscopy 11 days ago to look for endometriosis and I was also diagnosed with a frozen pelvis. I was told my uterus, bowel and bladder are all fused together & goodness knows what else.

My gyn was unable to remove any of the endo due to the bowel being affected. They need a bowel specialist to assist when this happens as it is such a sensitive area.

I called the hospital to make a follow up appointment asap as I was so upset last week. I am going back to see my gyn on the 22nd where I'm going to ask what was actually seen as I'm still not sure.

I believe I need to go for an MRI next so they can check the bowel then I need to go back for further surgery.

Hopefully your gyn will contact you soon for an appointment.

[TitianRed321]

Yes, my consultant found I had a frozen pelvis during my latest surgery at the end of March. I had my op at a BSGE centre. Surgery has stopped my urinary symptoms and almost all my bowel symptoms. I still have dreadful fatigue and bloated abdomen though. You have my sympathy. x